ALS and Anger

[Breakaway]

My brother was diagnosed with ALS in 2019. I spent three months living with him and taking care of him 24/7 Until one day he got very angry and kicked me out, that was in November 2021. He has blocked me on his phone, and when I go to his house he does not have his care worker answer the door and screams out get lost. He is now no longer talking to anyone in our family. I don’t know what to do, as I want to be in my brothers life.

 

[Bleue]

Just keep trying. He’s very angry, will probably be angry forever. It might even change to apathy. There’s nothing you can do except be there for him, understand what he’s going thru, and love him. Time flies too fast and you don’t want to have any regrets. Once you are back in his life, he might be open to a suggestion that he try anti-depressants and maybe therapy so he can express himself. Which may be hard if he’s non-verbal.

 

[Breakaway]

My brother is very much like my father, when he holds a grudge he holds it for a very long time. When I was living with him and taking care of him, I suggested anti-depressants and he hit the roof. So I never brought it up again. I am trying so very hard to get back in his life as time is a factor.

 

[lgelb]

If he is no longer talking with anyone in the family, it's not just you. Who is his health care proxy? Even if you have no role in his care, you can still speak to the clinic coordinator and express your concerns about his state of mind, so at least they are aware. There could be cognitive issues or personality changes, or both.

 

[lgg]

Have you considered writing to him? You could say newsy things or funny things, but nothing about him and his situation. Do this on a regular basis (2-3x a week or 1x a week). Don’t expect anything in return. My brother rejected me and I didn’t do anything but respect his wishes. He’s gone now and I live with regret.

 

[Janders]

This is very difficult, to be cut off like this when you only want to support. I appreciate your intention to support and your caring.

I encourage you to be patient as you hold him in your loving thoughts. My husband was very angry for over a year. He is better now. Antidepressants helped but it just took a long time for him to accept the diagnosis. During this time I worked on my own acceptance and how I would support myself . This helped. When he finally was calm I was here waiting. Keep checking in only to drop off a favorite food or book or something you know he values, but also make peace inside yourself and don't allow yourself to be on the receiving end of abuse. We have to find the ability to allow them to have the journey they choose while still loving them and managing our own very strong feelings.

 

[Jman37]

I'm a pals myself, and get angry sometimes over very little.things. I have no cognitive impairment, but the disease can get me charged sometimes. I am cared for by my elderly mother and nurses and try my best to be nice. ALS just messes with ones head badly. I have had it well over a decade and have learned how to lean into the diagnosis a bit. I'm sorry your dealing with this situation. Time may make things better.